Patient Story - Ambrosia
"My journey to diagnosis with primary immunodeficiency (PI) truly began when I self-referred myself to an allergist/immunologist. After multiple visits and tests, I learned that my body does not produce the antibodies that others have to help fight common skin and respiratory infections. Like many patients with PI, I was often sick with sinus infections, bronchitis, strep throat, and recurring skin infections." Ambrosia
As a busy professional, I became uncomfortably familiar with doctors at urgent care. Just before the start of the COVID-19 pandemic, I received my diagnosis and learned about my treatment options. I was driven to read and learn even more about primary immunodeficiency (PI) and discover how I could help advocate for others like me in the rare disease community. Doctors are taught to look for horses, not zebras, like those in the rare disease community when in medical school.
Find out from real patients what life with chronic disease feels like. The invisible pain, the insurance battles, and the hidden full-time job "being sick" entails, can feel like too much at times, and it is a weight you shouldn't have to carry alone.
It is so important that patients with rare and chronic diseases are heard. Follow patient stories detailing life with lupus, multiple sclerosis, thyroiditis, Chron's, RA, and other chronic and rare diseases.
Are you an infusion patient that wants to help shed light on the chronic disease journey? Reach out to the Infusion Access Foundation team so we can hear your story and help you find the right pathway for you to be really heard.
Infusion Access Foundation (IAF) is a community of patients united to protect access to treatments that you get at a clinic, such as infusions and injections. We support each other across all diseases and advocate with one voice that reaches policy makers.
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